Siblings on the Spectrum

Growing up, I knew I wanted children—a family of my own where I could let my children know that they were loved and always be there for them (somewhat opposite to my upbringing).

I met my hubbie as a single mum: two became three, then became four with the arrival of T, and then five with D’s arrival. I felt complete.

Bearing in mind that T and D were 18 months apart, it was a busy time. I’d either be balancing one on each hip or smiling as my little “pack” followed me everywhere, leaving behind a trail of Match Attax cards (in T’s case) or play food and Playmobil characters (in D’s).

And then something unexpected happened. Teachers at D’s nursery recognised within her first term that her speech, social skills and ways of doing things were far behind her peers. We investigated online ourselves whilst waiting for the first of many appointments and one word came up again and again—Autism.

D’s official diagnosis came when she was 4.5 and T was 6. It was an unfamiliar path we travelled as we journeyed from grief (for the child we wouldn’t have) to fierce protection of our frightened little girl who suddenly had this “label,” one that she would always carry.

It was hard to explain to T about his sister. We took to saying that our brains were made of puzzle pieces and, with his sister, hers overlapped in some places (areas) and had a bit of a gap in others. It seemed to help him; he’d see D melting down or becoming extremely anxious and say, “That’s her puzzle piece doing that, isn’t it?”

(I used this puzzle piece scenario before I was active on social media and realised that puzzle pieces seemed to be used by a lot of autism organisations. It made me think, “Jeannette, you’ve got this, now do more to get awareness out there.”)

There were times when I sensed that T felt embarrassed. For example, if he was eating lunch in the hall at school and D was refusing to come in because she was overwhelmed by sensory issues. There were times when there’d be a sports day or assembly and I felt torn between the two, wondering whether to comfort my overwhelmed daughter or watch my son compete. In a way, it felt easier on T that D received her SEN statement and moved to an SN school. We wanted him to enjoy school life without feeling over-protective towards his sister all through his school day, because he did.

When T was diagnosed with high-functioning autism at age 10, it was more of a relief than a surprise. His traits were becoming increasingly apparent in public, and however much he masked them during the school day, he was having issues with fellow pupils and teachers.

So, my determination to raise awareness and acceptance of autism doubled.

Having two children on the vast autistic spectrum isn’t always easy. At times I feel like I should have a referee’s whistle, but that wouldn’t work: T would respond quickly (as his passion is—and always has been—football) but the sudden, sharp, shrill noise would terrify D.

I can’t say they’ve ever really “played” together. Whether it’s an attempt at a board game or a splash in the pool, T will always make it competitive, try and guide D into a contest, and then get frustrated and annoyed when she doesn’t want to or melts down. It’s at those times that I hanker briefly for the traditional “Oxo advert” family, the children all smiling around a table, eating the same food and cracking jokes. But it’s only briefly, mind.

It’s not all doom and gloom, of course. D might not “get” traditional jokes and humour, but she absolutely loves “Keeping Up Appearances” and “Mr Bean,” even though she’s watched them so many times she knows exactly who will say what and when, slapstick humour obvious . T is more droll and more sarcastic in how humour and tone. He also does a pretty fantastic withering glare, which more-often-than-not is aimed at his sister, if he disapproves of something.

But, they have each other’s backs and are extraordinarily protective of each other, even if it’s not always shown.

I love them both, and am so proud of them and the daily challenges they face.

An Autism Mom’s Feelings About Grief

“You can’t stop the tide.”

I told my autistic son this during his first trip to the ocean. The vastness of the water frightened him and so, in his own way, he sought to control it by holding out his little hands and bravely shouting at the waves to stop. We’ve all been there, struggling to get our footing when the riptide moments of life threaten to pull us under.

Never is this truer than when someone you love is dying. This summer, my family is preparing to say goodbye to my father-in-law, the kindest and most hardworking man I’ve ever known. Over the last few days I’ve worried about and watched my sweet boy struggle once more to stop the tide. Except this time it’s the vastness of his emotions that frightens him.

People with autism are so often portrayed as lacking emotions. But my boy is often flooded with them, to the point that he nearly drowns. When this happens I wade through the murky depths of his feelings and try to help him stay afloat. This isn’t easy these days since half the time I feel like I’m drowning, too.

Grieving with a special needs child, like anything else, seems so much harder. The meltdowns, the overstimulation, and the judgmental stares of strangers heighten the moment. Add to that the common struggle of helping your child make sense of something that you yourself don’t understand. I wish I could impart some kind of wisdom to other parents out there that, like me, are treading water in the sea of grief, but I sadly don’t have any answers.

Instead, I want you to know you’re not alone. In the chaos it’s easy to feel isolated. All the things that make your child’s day easier—staying on schedule, eating healthy meals, and having a routine—are nearly impossible in these situations. It’s easy to panic and flail as you frantically try and get some semblance of control over your universe.

It’s OK if you stumble and fall along the way. Saying goodbye is hard and it should be. But it’s important to remember that when you struggle for control, you risk drowning. It’s only when you lay back, trust the water, and float that the tide brings you safely back to shore.

She Has Non-Verbal Autism, But Her New Friend Understands Her Just Fine

If you have a non-verbal child, chances are you know how hard it is for them to make friends. That’s why we know you’ll love this video.

The mother of Carly Jade, a 6th grader with non-verbal autism, took the video at a local Chuck E. Cheese after she saw the way that Carly Jade interacted with her new friend, Zoe. Zoe is neurotypical, but seems to have figured Carly Jade out. As Shannon, Carly Jade’s mom, explained in her Facebook post:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she’s often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her..

So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed!

We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

We’ll let this wonderful video speak for itself:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she's often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her.. So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed! We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

Posted by Shannon Sommers on Tuesday, May 23, 2017

New York City ‘Detective’ Program a Hit With Kids With Autism

If you’re planning a trip to New York City, be sure to add a stop at the New York Transit Museum in Brooklyn to your itinerary. The museum, open since 1976, has exhibits and collections featuring all things to do with public transit in the Big Apple, including the evolution of the subway system, part of a city bus where visitors can take the wheel, and a scale-model collection of trolleys and work cars. It is located in a former subway station.

For the last five years, the Transit Museum has also had a “Subway Sleuths” program for children in grades 2-5 on the autism spectrum. In 2016, the innovative program won a National Arts and Humanities Youth Program Award.

Meant more for locals, Subway Sleuths is an after-school program that “uses a shared interest in trains among kids on the autism spectrum as a means to encourage peer-to-peer interaction and develop social skills and confidence through goal-oriented sessions,” according to the museum’s website. Participants work in pairs and collaboratively in groups to solve mysteries in the museum’s subway station exhibit, using clues and walkie-talkies.

According to Regina Asborno, deputy director of the museum, “It’s all about taking turns and communicating, but we layer it all around transportation, which is something they love.”

Space in this program is limited to 36 children, and all candidates go through a screening process. “Semesters” run in both the spring and fall, and scholarships are available. Parents of past participants attest to the social skills that their children gained, as well as new friendships and increased confidence in communicating. All sessions are run by a Transit Museum educator, as well as a special education teacher and a speech-language pathologist who have been trained in ASD support.

In addition to the Subway Sleuths program, people with ASD are also attracted to other features of the transit museum, including the interactive exhibits.

“You have a track and a train and you have a schedule and you have times and places and it’s visual and you can see it and you can experience it. And it’s knowable. It’s not a lot of change. And that’s calming and very comforting,” explains autism specialist, Susan Brennan.

Recently, representatives from 60 cultural institutions came to learn about ways to use the exhibits at their own museums to attract and engage the autism community. We look forward to the spread of autism-friendly programs and exhibits to museums around the world.

When Living With Your Autistic Child Becomes ‘Unsustainable’

I went with my daughter to see a mental health advisor. Her anxiety is out of control, her sleeping is poor and her eating almost non-existent. It is obvious my daughter is struggling and is on the cusp of being diagnosed with a mental health condition. The more my daughter talks and the more the advisor hears about home life, the more she shakes her head.

“This cannot continue,” she says with a sigh. “This level of anxiety is unsustainable.”

“Until the root cause of the difficulties is addressed,” she says looking right at me, “your daughter is never going to get well.”

“You already seem to know this. Will you help your daughter?”

She is asking me to put one child above another.

My son with severe autism is destroying his sister mentally and keeping them together is now “unsustainable.”

I had a long chat with the social worker. The hours of screaming, the self harming, the level of control that rules the entire house: it is killing my family. The smearing, the lack of sleep, the isolation: it is destroying my marriage. The violence and anger is damaging both physically and mentally to us all.

She gives me a stark choice: either one child will end up in a mental hospital or the other will need residential care.

Continuing as we are is not an option.

Then there are the parents. Both already on antidepressants, both exhausted and drained and barely functioning.

Love is not the question here: living is.

What do you do when caring for your autistic child becomes “unsustainable” for the rest of the family?

What if his unrelenting need for sameness means others are denied change too? What if his lack of sleep is physically exhausting everybody else? What if his meltdowns are so severe they are putting others at risk? What if his care needs mean siblings are denied having friends over and can never be part of the community they live in? What if his rigidity is so severe that nobody can have a haircut or even a new pair of glasses? What sort of effect does that have on a family?

Is love enough when damage is being done daily to everyone, both mentally and physically, by keeping the child with autism at home with his family?

He is my child, my heartbeat, my every breath, my all.

I can’t let go of him, but I am not sure I should keep him either.

This is not bad parenting; this is life with severe autism. 

I am doing my best with insufficient support. So many families are in the same place.

Love is not the question, living is.

Can I actually admit to myself that living with my own autistic son is “unsustainable”?

The Autism-Friendly Products We REALLY Want

When your child has autism and disabilities, you start to notice as they get older that some products you’d like to buy just aren’t easy to get hold of — or available at all. And, if they are, you can guarantee that there will be a disability price tag attached to it! You know that one where they multiply the normal price by ten, adding lots of extra zeros?

My friend and I often joke that if we were entrepreneurial enough, we’d set up a store for the disabled community with an array of products at affordable prices. Someone is missing a trick! There are so many products not on store shelves that I know would sell! And why are we so often ripped off?

So businesses, if you ever feel like listening, here are just some of the things parents would like to be easily available to buy…

Bigger Nappies and Swimming Nappies

In the U.K., we are lucky to have the NHS continence service, but not everyone is entitled to free nappies and not everyone gets the amount that they need. There are bigger nappies available online, but they tend to come with the disability price tag and with fewer in a pack than standard-sized nappies. It would be great to be able to buy bigger sizes at a reasonable price in supermarkets. I actually started a petition about this in the U.K. last year, so watch this space!

Similarly, we have the same issue with swimming nappies. I’ve just bought my 5 year-old son, Brody, one online that is washable, but in the U.K. it’s very hard to buy disposable swimming nappies for older children and adults.

Bigger Ride-On Toys

Brody learnt to use a ride-on toy when he was nearly 4 years old. He is tall and now, sadly, too big for them all. He is unable to use pedals. I contacted Little Tikes last year to ask if they would consider making a bigger Cosy Coupe because it breaks my heart when Brody tries to climb into his younger sister’s. And I know I’m not alone. I have seen lots of people online with the same predicament so many times.

Little Tikes response was that there wasn’t a big enough market for it. Hmmm… I beg to differ!

Bigger Push-Along Toys

Bigger push-along toys, like buggies, for children who are late to walk or just like to push toys along would be great. My son was a late walker and needed support for a long time. These days he loves push-along toys, like his toy lawnmower and buggy, but they are fast becoming too small for him.

Cartoon Character Clothing

Character clothing tends to stop at a certain age. The age when a neurotypical child is no longer interested in having “Bing Bunny” or “Peppa Pig” on a T-shirt. It’s sad for parents who can’t buy their child a T-shirt with their favourite character on it because they are typically “too old” for it. Someone please make them in bigger sizes!

Whilst we’re at it, can we make the head holes in T-shirts a little bit bigger for children who have slightly bigger heads, like my son?

Trouser Pants with Nappy Space

Yes, I’m back to nappies again! There are a limited number of stores where I can now buy Brody trousers because a lot of trousers for children his age have less room around the bum and not enough space for a nappy. They also have really skinny legs on them.

We need trousers — jeans, joggers, cargo pants, shorts and pyjama bottoms — with higher and elasticated waists. I’m lucky there are a few stores I can rely on at the moment. But I know this will get harder as he gets older. Then I’ll have to refer to a catalogue with no doubt overpriced trousers and a disability price tag. Sigh!

Trouser Pants with Reinforced Knees

If your child falls over a lot like mine, you’ll get through trousers very quickly. Is there such thing as trousers with reinforced knees? If not, please can some entrepreneurial genius design and sell some for our kids?!

Sensory-Friendly Clothes

A friend of mine struggles to find her 12 year-old daughter short-sleeved jersey dresses with no buttons, textures or other embellishments. As seam-free and decoration-free as possible, please!

Can we add seam-free socks to this list?

Bigger All-in-One Pyjamas with Feet

Is it just me or do these seem to stop being available at around 4 years of age? We struggle with bedtime wear. A lot. Brody won’t keep a duvet on him and it’s hard to guess whether he is too hot or too cold (he is unable to tell us). Fleecy all-in-one suits with feet on have been brilliant in the past, but we now can’t find any in his size.

Safe Beds

Brody is fortunate enough to have a travel bed currently on loan from a charity. It has high material walls that are soft and is low to the ground. This means that when he bangs his head, which he frequently does, he doesn’t hurt himself. You can also zip the side of the bed up if you like so that he is asleep in a safe space. Brody has epilepsy, as well as autism, so a safe bed is essential.

The bed is fantastic, but it costs more than £4000. I’ve seen other safety sleeper beds advertised online for similar prices. The cost is ridiculous! I don’t know how they even begin to justify it.

You can add specialist seating here too! My friend’s son, who has complex disabilities, has a bean bag with effectively a Velcro strap attached to it. It cost £600. It’s not hard to make, so why the high price?

Specialist Shoes

If your child needs specialist shoes, you know that these come at a price. Thank God for the NHS in the U.K.. Brody’s piedro boots cost around £120.

If your child has an AFO or splint, you’ll know finding shoes that they fit into is a total pain!

There’s a gap in the market here!

Bigger Strollers

Someone please design a bigger stroller that you can buy in stores that doesn’t have that disability price tag. I promise people will buy it. Do it now, please!

Bigger Car Seats

Again — come on! Why does a seat that looks identical to the typical, slightly smaller version cost so much more money? Bigger car seats with a five-point harness that don’t cost the Earth to buy. They. Will. Sell!

Inclusive Play Parks

When playgrounds are built, so often children with autism and other disabilities are left out of the thought process. Bigger swings, equipment for wheelchairs, sensory play equipment. There are so many things that could make play parks inclusive. Yet, most aren’t inclusive in the slightest. This is why we love our own garden so much. There is play equipment Brody can use and we know he is safe, which is paramount.

But surely all children should be able to enjoy their local playground?

Rant over!

What do you think?

What would you add to the list if you could?

Maybe one day, if we all shout loud enough, someone out there will hear us and help us parents out.

Please?

 

Julia, Sesame Street’s New Autistic Character, to Appear at Sesame Place

The newly introduced — and already beloved — Sesame Street character, Julia, will make her debut “live” appearance this Saturday, April 22, at Sesame Place in Langhorne, Pennsylvania.

Sesame Place holds their “Autism Awareness” Day event annually, in partnership with Variety, a local charity for children with special needs. As an autism-friendly event, the park will make adjustments to its usual operations, including low-sensory character shows, designated quiet areas and adjustments to noise levels. Julia will be walking around the park, welcoming attendees.

The event runs from 11 a.m. to 5 p.m. and is free for members of Variety. Parking is $25. Check out this link for more information.

Sesame Place officially opens for the season on April 27.

Autism Eats — (How to Start) Dining Out with Autism

Being a parent of a child with autism can be hard. I do not think this is a statement that breaks any new ground. We miss many of the things that on the surface seem so simple and enjoyable, but in practice are not.

There may be no more stressful situation for an autism family than a trip to a restaurant. It is anything but simple and enjoyable. There can be anxiety over being in a new place, sensory overload due to the sights and sounds, favorite foods are not always on the menu and the server may take too long bringing the food and check. Children with autism might not want to sit still, preferring instead to bolt for the door, flop on the ground or play their iPhones too loudly.

The tension builds: Other diners may look in our direction and the restaurant does not know how to help.

Many autism families decide the stress of dining out outweighs the enjoyment and so choose not to go. We were clearly one of these families that succumbed to the stress and limited our restaurant outings.

My wife Delphine and I started Autism Eats because we missed going out and wanted to enjoy time with our family and friends at a restaurant. We knew that other autism families felt the same way.

So three years ago, we created the Autism Eats restaurant model that ensures success and enjoyment for all guests.

Restaurants are carefully selected and must have the right physical layout for us to create our non-judgmental zone. Everyone in our room “gets it,” so there is no need to feel like all eyes are on us or to apologize for anything. All behaviors are welcome.

Families are greeted at the door to confirm that they made the right decision to join us today. They are escorted to a family table or a community table as a natural way to meet new friends. Reservations and payments are made in advance, and a variety of kid and adult food is served buffet-style. There is no waiting. Kids receive toys, and lights and background music are both turned down.

All potential obstacles to an enjoyable experience are accounted for and corrected.

To date, we have had 25 brunch, lunch and dinner events in independent and chain restaurants in multiple communities across Massachusetts, California, Pennsylvania, Virginia, Illinois, Florida and Hawaii. In the next two months, new communities in Georgia, New York, Rhode Island, Illinois, Missouri and New Brunswick will hold their first Autism Eats events.

More than 2,000 individuals with autism, their parents, siblings, extended family, friends, teachers and caregivers, have come together for Autism Eats restaurant events. We have watched people enjoy a typical restaurant outing with their families, make new friends, arrange playdates, schedule rounds of golf, network, and discuss the news, sports and politics. Wow!

If you are looking to bring your autism community together, meet new people and have fun, then starting an Autism Eats club is an easy way to do it.

We will provide you with the step-by-step instructions, from selecting the restaurant to menu planning, community outreach and running the events. We will also promote your events on the Autism Eats website, take reservations, collect payment and pay the restaurant.

If you are interested in learning more, please contact Autism Eats directly.

Our upcoming events include:

  • 3/18: Dinner at Fireside Restaurant, Chicago, IL (sold out)
  • 3/20: Dinner at Red Rooster Harlem, New York, NY
  • 3/21: Dinner at Chelo’s, Providence, RI
  • 4/12: Brunch at BJ’s Restaurant, Victorville, CA
  • 4/ 24:Dinner at Maggiano’s Little Italy, Boston, MA
  • 4/25: Dinner at Williamson Bros. Bar-B-Q, Marietta, GA

Do You Want to Build a Snowman?

Back in December, on a cold and snowy night in Pendleton, Oregon, 6 year-old Billy Larsen found out that school was cancelled for the next day. While children are typically happy to have a snow day off from school, Billy—who has autism—was upset because the snow day meant the Christmas party that his class was supposed to have the next day wouldn’t happen either. And he had been really looking forward to it.

After he’d finally fallen asleep, Billy’s mother Holli tried to think of a way she could cheer up her son so he wouldn’t be so upset in the morning. She thought of how much he loved snowmen, and considered going outside to make one but, she admitted to The Register-Guard, she was tired and didn’t want to go out in the cold and snow. Her husband was already sleeping because he leaves early in the morning for work.

So, on a whim, she posted a message on the local classified’s Facebook page that she would pay $20 to anybody who came over to “build my special need son a snowman right now. Want him to be surprised in morning. School was canceled tomorrow & Christmas parties, etc. This may help him.”

She didn’t know if anybody would read the ad. But about a dozen strangers showed up to create snowmen, including at least one family and some buddies looking for gas money. They pointed their vehicles to the front yard so they could see, and started to gather snow.

Unfortunately, the snow was too powdery to build with. Luckily for Holli and Billy, the intrepid builders didn’t give up. Instead, somebody suggested they use the snow that had been cleared in a local Dollar Tree parking lot. They went there and filled three pickup truck beds with the packable snow and brought it back to the Larsen’s yard.

Somebody had brought a carrot for a nose; somebody else had brought some hats. They found rocks and sticks for eyes and mouths. It was a team effort from complete strangers, and some even refused the $20 in the “Christmas spirit.” As one of them said, ““We were just happy to help this kid out for Christmas.” Holli was overwhelmed by their effort and generosity.

What did Billy think the next morning when he saw the army of snowmen in the front yard? “It was awesome!”

Sometimes it really does take a village.